… People with inflammatory bowel disease (IBD) face more than three times the annual direct healthcare costs of those without IBD … along with more than double the out-of-pocket expenses.
— Laura Wingate, Chief Education, Support & Advocacy Officer at the Crohn’s & Colitis Foundation
That kind of financial pressure makes it essential to understand how your health insurance works and how to use it as effectively as possible, just like any other part of your treatment plan. These practical tools and strategies can help you better manage your healthcare costs.
1. Even With Insurance, You’ll Have Out-of-Pocket Expenses
Because advanced Crohn’s disease therapies and hospital-based procedures are so expensive, coinsurance charges can be much larger than a typical copay, especially for people who rely on biologic drugs that drive much of the cost of IBD care. It’s crucial to learn how copays and coinsurance work and to talk with your care team and insurer about expected charges before scheduling high-cost treatments, so there are fewer surprises in the final bill.
Many people with Crohn’s disease also rely on manufacturer copay assistance to make expensive medications more affordable, but some insurers have a “copay accumulator” policy that prohibits that assistance from counting toward your deductible or out-of-pocket maximum, leaving you exposed when the copay assistance card’s limit is used for the year.
2. You Will Likely Have ‘Tiered’ Prescription Drug Coverage
Most plans put lower-cost generics in tier 1 with the lowest copays, preferred brand-name drugs in tier 2, and non-preferred brand-name drugs in tier 3, while “very-high-cost” drugs like many biologics are placed on a higher tier that often requires coinsurance instead of a flat copay.
To see where your specific medication falls, you can log in to your insurer’s member portal and look for a link labeled “Drug List,” “Formulary,” or “Prescription Drug List” under pharmacy or benefits, or by calling the member services number on the back of your insurance card and asking them to send you the current formulary for your specific plan.
3. You May Need to Use a Specialty Pharmacy
Many advanced Crohn’s disease treatments, including biologics and other injectable or infused medicines, are considered specialty drugs, which means they often have to be filled through a specialty pharmacy rather than your local drugstore, because they require special handling, storage, monitoring, and support services.
To find out whether you need to use a specialty pharmacy and which one is in-network, you can check your plan’s pharmacy benefits online or call the member services number on your insurance card.
If there isn’t a specialty pharmacy near you, your health plan will often work with a mail-order or centralized specialty pharmacy that can ship your Crohn’s medications directly to your home, clinic, or infusion center, using temperature-controlled packaging and precise delivery windows to keep drugs safe in transit.
4. Your Insurance Plan May Have a Step Therapy, or ‘Fail First,’ Requirement
If your insurance plan uses step therapy, find out whether your state is one of more than three dozen that currently have a reform law and how to request a medical exception or appeal. You and your gastroenterologist can often do this by showing that a “fail first” drug isn’t right for you, helping you get faster access to the treatment you need. You can learn whether your state has a step therapy reform law by checking the Crohn’s & Colitis Foundation’s interactive state map.
5. Some Drugs and Procedures May Require Prior Authorization
Some Crohn’s disease treatments and procedures require prior authorization (sometimes called pre-authorization or pre-approval), which means your doctor has to get your health plan’s approval before you can start the treatment.
This extra review can delay the start of important IBD medicines. Research on IBD shows that prior authorization requirements are linked to slower biologic starts and higher use of healthcare, including hospitalizations. You can sometimes speed things up by keeping a detailed symptom diary, making sure your medical records and test results are up to date, and promptly signing any forms your gastrointestinal office needs so they can submit a complete request the first time.
Your doctor may prescribe you a drug off-label, which means they prescribe a medication different from what the U.S. Food & Drug Administration label says — for example, using a psoriasis drug to treat Crohn’s disease or combining biologics in complex cases. While it’s not uncommon for these drugs to require prior authorization, it varies by drug and insurance plan.
Prior authorization policies are common with IBD treatments generally, but often lead to extra review and a higher chance of insurance denial. If your off-label prescription is denied, ask your gastroenterologist about filing an appeal that explains the medical evidence, cites clinical guidelines, and documents why the insurer’s preferred alternative is not appropriate for you, and consider submitting a personal letter describing how delays worsen your symptoms and daily functioning. The Crohn’s & Colitis Foundation provides template appeal letters your doctor can send to your insurance company if your off-label drug is denied.
6. Ostomy Supplies Are Covered Differently From Drugs
That means they may have their own deductibles or coinsurance and are often subject to strict monthly limits — for example, Medicare and most private insurance companies typically allow an average of 20 drainable pouches per month — unless your provider or ostomy nurse documents why you need more as a matter of medical necessity.
Instead of using a local pharmacy, most people must order through an in-network DME or ostomy supplier. Items like decorative covers, wraps, or specialized underwear are usually treated as convenience items and aren’t covered.
7. When Coverage Is Denied, You Can Appeal
If your health plan denies coverage for a Crohn’s disease treatment, the denial letter should explain the “reason code” for the decision — such as saying the service is “not medically necessary” or “experimental” — and outline your appeal rights.
With the right support and persistence, there is a strong chance you can get the treatment you need.
The Takeaway
- While Crohn’s disease care is expensive even with health insurance, educating yourself on how your plan works can help you keep your costs down.
- Insurance won’t cover everything, but there will be a cap on how much you pay out-of-pocket each year.
- Learning to navigate prescription drug coverage for Crohn’s is particularly important, as specialty medications and so-called step therapy can make things complicated.
- While coverage for prescriptions and services may be denied initially, you have the right to appeal, and there is a high success rate, particularly when it comes to getting certain drugs covered.
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